About me

From the AVM SURVIVORS web site: "Arteriovenous malformations (AVMs) are defects of the circulatory system that are generally believed to arise during embryonic or fetal development or soon after birth. Although AVMs can develop in many different sites, those located in the brain or spinal cord can have especially widespread effects on the body".
I am currently undergoing embolizations with Dr. Wayne Yakes @ the Swedish Medical Center in Englewood, CO every 8 weeks! Our lives are either planning a procedure, having a procedure or recovering from a procedure! The trick lately seems to be to keep the "bleeds" under control! My husband Mark is also my caregiver! He has become an expert wound care therapist, not to mention all around bundle of being just exactly what I need to get through the day and this ordeal we call an AVM! I recently finished 10 years of Embolizations w/Dr. Yakes and am finally ready for my next stage - Debulking and reconstructive surgery w/Dr. Robinson in CO - he is a dentist and plastic surgeon! Best advice to an avm patient - Stay positive and surround yourself with supportive people! Lots of faith, prayer and love are all crucial too!

Saturday, December 26, 2009

Hello once again!

Got my second wind @ 2:00 a.m., so I decided I would finish the trache trip story! I'm going to include a photo of the respiratory tech. that came to explain a few things I needed to know now that I had a trache, and photos of us arriving @ the airport in Corpus Christi, TX - home!

The hospital sent me home with a machine that I might need to use to suction my trache to get it clean. We were given a demonstration on it - and when I say we, it was Mom, Celia and I. Well, Mark would be the one needing the instruction, but he was already home. We eventually got a repeat of those instructions from a home health care respiratory tech. - and a respiratory tech. from where I ordered more supplies. The best part of this whole thing, is that a very dear friend of ours that lives 2 houses over, is a respiratory technician! We stopped @ her house on the way home from the airport to make sure everything was ok as far as my trache was concerned!

Speaking of the airport, I was so happy to see our family came to welcome us home! My moms husband Vicente, Celia's husband Greg and their oldest son Mark and their dachshund Penny! Of course my Mark and our baby Hanz! You know what? I think I'm saving this for tomorrow, so that Mark can download some recent photos he took of our neighbor Terry changing out my entire trache collar!

Hi again!

It's several days after I wrote the above, and I plan on finishing up the saga of the trache trip! On Thursday, it will be a couple of weeks that I had the entire trache changed out! As I mentioned above - our friend/neighbor Terry is a respiratory tech., and a real angel about helping in any way she can! See photos of Terry changing out my trache! I asked her if it would hurt and she said no, but that I might feel some pressure. I barely felt anything @ all! I was really happy about that!

Not sure if I mentioned that @ night, I sleep with a mist cup over my trache that is attatched to a long, blue hose that leads to a big humidifier that sounds like a compressor! Before I put that mist cup on, the little red cap (Decannulation Plug) comes off my trache, so the mist is able to go in! The other day I coughed a bit hard, and that little red cap flew off my trache and under the bed! Mark had to get it, as I can't bend over, or I may have a bleed! Right after he handed it to me and I cleaned it off and replaced it - I had to clear my throat, and that darned little cap flew off again! This time we looked all over for it, when Mark said, "I sure hope Hanz doesn't have it in his mouth"! We both looked over @ Hanz, who seemed to be chewing on something! Upon closer investigation, he was chewing on a little red cap! Yikes! It's a good thing we had kept and disinfected the trache that Terry had removed, so I got the red plug off of that one! I called my trache supply people the following day to ask for an extra one, which I am so glad they had! I was afraid something might happen again during the Christmas holiday and I wouldn't have a replacement!

I think this is quite enough adventures of the trache trip, don't you think? I want to go relax a bit and watch my Soap and/or talk to Mark and play with Hanz! In case some of you don't know - if you click on the photos, it will enlarge it! At this point, my next appt. for an embolization is set up for Jan. 27,28 and 29th I believe! I can't wait - I enjoy seeing everyone up there! Although I'll be so happy when this nightmare is over one day - it's going to be hard saying goodbye to the wonderful doctors, P.A.'s and nurses that have been so amazing in careing for me!

Thank you all for your wonderful support through this very difficult time! We appreciate all of you very much! God Bless!

Friday, December 25, 2009

Hi Everybody!

I decided to go ahead and blog a bit more and include more photos from the last trip we made to Denver! I just want y'all to get an idea of what these trips are really like for us and why all your prayer help us so much!

I'm still hearing bits and pieces of what went on during this trip, as I was under a couple of days, so I lost track of time! Seems Dr. Yakes did the embolization first and once they noticed the swelling, it was decided a trache was neccessary. I was "kept under" and not allowed to wake up from the time I had the embolization until after the trache was done. The doctors didn't want me to be uncomfortable having the tubes in my mouth for a long time I guess.

Once I was able to finally sit up in a chair, Mark said I was a big pain in the butty butt butt! (My nephew Mark used to laugh when my mom would tell him she was going to spank him in his butty butt butt if he was a bad boy). Apparently I was a bit crazier than usual w/all the meds I was under and I was not being very cooperative. I can't imagine anyone w/a hole in their neck that had been starved for five days and had blood in their hair from the procedure would be alot of fun, do you? Poor Mark - he does tolerate a lot from me - he is a saint! Mom and Mark did their best to "wash" my hair while I sat up in a chair. They wanted to get the blood out of my hair and get me to feeling better. I also had to wear a type of "support stockings" to make sure I didn't get a clot in my legs from laying in bed all that time.

You'll see a photo of Mom and I - doesn't she look great? It was a great help having her there! She said all her brothers and sisters called asking about how I was doing! I know Marks family was calling as well! In one photo you'll see a nurse feeding me ice chips (yum! - Not!) and in another the nurse is cleaning my trache tube.

Mark had read in the paper where a statue of Our Lady of Fatima was touring different churches, so he and Mom went to the church - so here are photos of them there!

It snowed (9 inches) the whole week I was there, so I'll include some of those photos! Mom was delighted to see the snow! We don't get much of that in S. Texas! There is a photo of Mark outside @ Whole Foods Mart and that's him in our rental car!

I wish I could have been out in the snow! I was so happy when it was finally time for me to leave the hospital! I had to stay @ Swedish a week to make sure my trache would be healing properly! After not having food for 5 days, I finally got some "blue" applesauce - as they needed to make sure the food was going to the right place after having the trache! What an experience this has all been! Definitely the hardest thing I've ever gone through. We always tell people that when Mark and I said "I do", we sure didn't know it would get this bad! I'm aware that people go through worse - but this has been no picnic that's for sure! Mark has been incredible through it all - he could have walked away from me, but instead, he had loved me through these very hard times! His faith, strength and love help keep me going!

As always, please do keep the prayers coming in our direction! I feel we are getting close to the end! If Dr. Hepworth (ENT) was wanting to "debulk" under my chin area already, then the fear of massive bleeding must almost be behind me! I've recently heard how several of Dr. Yakes patients have finished their procedures successfully! How awesome is that?! Hopefully that will be me soon!

Good Morning Everyone! For all of you following my blog, I just want to wish everyone a very special holiday! We have had fun and are so blessed in so many ways! I don't think I ever got a chance to show you what an elegant table my sister Celia set for Thanksgiving! I told her to take it easy, but she wanted to use her fine china and her mother-in-laws silverware. We all make very special dishes to add to the holiday meal! How blessed are we that we ended up with three turkeys? Greg smoked one, Celia roasted another one and Mom brought a roasted one too! I'll post our Christmas photos soon - Celia is making a turduckan (sp?) and her Mark is making that delicious veggie bake we all love so much! It's like an elaborate green bean casserole! My Mark is making a spiral glazed ham with all the fixin's! For me, it isn't Christmas w/out a ham that has brown sugar glaze, pineapples, cherries and cloves! Plus, Mark is making fresh cranberry relish we all love and of course the much requested walnut horn cookies!

Gotta finish up a few things before we head out to Celia's for our big Christmas meal! Happy Holidays to everyone! We love you and I will blog soon on part 3 of the Trache Trip! Have a safe, Happy New Year!

Cyndi

I am posting a photo of the elegant table Celia set for Thanksgiving and our two hosts for the day, Greg and Celia Fossum!

Monday, December 21, 2009

Merry Christmas Everyone!

Would you believe I'm just starting to write out Christmas Cards? Please accept our appologies if you don't receive a card from us! Our computer crashed not too long ago and there went all our addresses! Most of them anyway! Still need to shower and iron my clothes for work tomorrow!Merry Christmas everyone! I will blog again very soon!Love,Mark & CyndiP.S. Not sure how this will turn out - but I scanned the photo we have of Hanz with Santa @ Petsmart!

Friday, December 18, 2009

Greetings again to everyone! Are you ready for the holidays? I need to really kick it in gear - right now the only people that have a gift are mom, Hula (Mark Fossums dog,) and Penny - my sister Celia's weenie dog!

So the reason I've titled this "Got A New Neck" is when Davis was a little boy (maybe 4 or 5?) - the receptionist @ his dad's office was wearing one of those foam neck support braces, as she had a disc or two removed (?). Davis went up to her and asked, "Got a new neck"? Since the first time I met Dr. Reed, he told me that I may need a trache and I had really hoped to avoid that from happening! I have really been blessed so far, that it wasn't until very recently that I ended up having to have a trache. I know one of Dr. Yakes patients needed a trache from the beginning of her procedure and had to deal w/it until the very end of all her procedures! That was Joanna from Portugal, as her artero malformation was on both sides of her face!

When we went to CO for this procedure, Dr. Hepworth (ENT) was going to try and intubate me w/the smallest tube he had. We knew there was the possibility of my needing a trache, but had really hoped to avoid it if possible!

Well, I report to Swedish @ my appt. time, and get all prepped for surgery. Got a chance to see Dr. Yakes before my embolization - see photo, and I believe I visited with both Kelly and Eric, Dr. Yakes P.A.'s! Normally, after an embolization, I wake up in Recovery - a very well lit room with a lot of activity going on and usually right away a nurse will check in on me and start trying to wake me up from the anesthesia.

This time when I woke up, I was in a dark room (I didn't know I was in ICU) I had a mouth full of tubes - it was only 2 (a feeding tube and breathing tube), but when you can't open your mouth very wide, it feels like a lot of tubes! My arms were tied down - I know it's for the patients own good - they don't want you to pull those tubes out! I remember trying to cough, but I couldn't hear or feel anything coming out of my mouth! The only thing I can relate it to is hearing my brother-in-law Greg's brother - Astronaut Mike Fossum - talk about being in outer space! Like being out in the pitch blackness with nothing to "grasp" on to. I kept thinking, "why hasn't Mark come to see me"? "What time is it, what day is it"? Where is a nurse to tell me what is going on? It would have been so easy to panic and start pulling at the restraints... but I decided to start praying instead. Oh I knew that I was not alone and kept my sanity by praying lots of Hail Mary's and Our Fathers! I am going into alot of detail, so that all of you can know what I'm going through and how much all your prayer help me get through an extremely bad situation! Of course to add to all the fun I was already having - I had a catheter (sp?)! I was in and out of consciousness and I had no concept of time. Without my glasses, I couldn't see the clock on the wall - I would hear the nurses say what time it was once in a while, but never heard whether it was a.m. or p.m.! I heard I was in CCU and then after that, finally put in a regular room!

Dr. Yakes had started working under my chin - on the mass of avm. Well, the swelling went inward, therefore the doctors ended up having to do a trache. See photos of what I looked like when I got out of ICU! Celia was upset to see them, but you know, it's part of the process and what my life is about these days! Dr. Hepworth got rid of some of the big vein I had going down the front of my neck! He said he would get more of that next time! One photo is of me after just having the embolization. The next one is after having the trache!

When I was finally able to speak and figure out what was going on around me - my first thought was - Hanz! My baby was being taken care of by my brother-in-law Jim and his wife Shelley, but I didn't want Hanz to think his mommy and daddy abandoned him! Mark had asked me if I wanted him to call Mom or Celia to fly in to Colorado and I said yes! That way, he could go home, get back to work and pick up Hanz! Mark was with me in CO for a week, so he really needed to get back to our house! Celia was @ a dental conference in Las Vegas with her husband Greg and their office staff and other dentists that are personal friends. Celia had Mom flown in to CO and Mark picked her up @ the airport. Celia flew in a day or so later and Mark was finally able to go home!

Meanwhile, as I'm recovering, I've realized that I haven't heard the nurses mention decadron (sp?)! I know from past procedures (at least 33) that the nurses inject the steroid into my IV to help w/the swelling! So I asked the nurse about it and she said there were no orders for that medication on my chart! At this point, I can't really talk, so I'm having to write down what I want to say, and being under so many meds, is't helping my handwriting to be understood! I was not on one of the regular floors that I'm usually on and the nurse was just not familiar w/the routine! I tell her I have to have the decadron and she says she will try and reach Dr. Yakes, as now it is after hours. The nurse comes in later saying she reached a doctor that sometimes takes Dr. Yakes calls and after telling him the situation - are you ready for this? - he said something to the effect of - it's just another 12 hours - I guess he meant before Dr. Yakes would be back in the office. I'm thinking, "THOSE ARE MY 12 HOURS"! Each second counts for me, you know? I was not accepting that as an answer, so I told the nurse to try and reach Eric or Kelly. She comes back with the answer that neither is available because it's after office hours! I'm getting pretty angry now, you know? I write her a note to tell her to call my husband Mark and I guaranteed he would reach one of the P.A.'s! Mark was able to reach Kelly and this is what had happened. Apparently my embolization was done first and there were orders for the meds I needed for that. Then a day later when I had the trache - there were new orders written for what I needed done for that! So, out went the orders for decadron that reduce the swelling after my embolization! Finally all that was straightened out - but it was ridiculous that I'm the one that noticed I was not being given the meds I needed! I don't even remember when Dr. Yakes and Kelly came by to see me! Don't I look like I'm telling Dr. Yakes in the one photo, "Why did you do this to me"?!

Ok, this is enough blogging for tonight! I'm sleepy, so I guess this will actually be a 4 part series! I've got lots of photos to share and lots of details from our big adventure! I'll blog again real soon!

Friday, December 11, 2009

Hi Everyone! Gosh, I've missed writing to you! I finally feel up to writing and have my bearings (well almost) and have all my photos downloaded! This was one heck of a trip and it will involve probably a three part series of blog entries! I'm going to start with the beginning of our trip that Mark and I set off on - and the plan was to leave here Tues. Nov. 10th, have my embolization Wed., Nov. 11th and return home on Thur. November 12th!We arrived in Denver Tuesday morning and the weather was beautiful! Almost cold enough for a jacket, but the sun was out and it was awesome! I brought Saba with me of course - but this time we were on a special mission! I guess I pick her up too much from her arms, so her armpits were needing repair, so off we went to the Build a Bear in Littleton, CO! See photos! There was a new type of "animal" that was a promotional thing - in fact, last time Celia and I were in CO, we were told that very few BAB's had this stuffed toy and they were trying it out to see how popular it would be! Took a photo of a couple bears that were so cute in their Christmas clothes!I had an appt. w/the new ENT we are working with - Dr. Hepworth, and he has an office in the Lonetree area! Dr. Hepworth is so awesome - my family is very happy with his work and the enthusiasm he brings to our situation! We enjoy going to a big mall nearby for several reasons! One is that they have a petstore, so here I am checking out the cute puppies! Shhhh... don't tell Hanz! We like to see if they have any Brussels Griffons - because they did the first time we ever went in there! It's just fun to see the puppies, and sometimes we get to pick them up! Then I start missing my Hanz - waaaaa!I love going to the Borders Bookstore too, and they had a display of things from the Twilight Series - New Moon! Had a blast with everything they had! There was a video movie set up with previews of New Moon that I enjoyed watching! For you Twilight fans, can you see Laurent in the video?! Wasn't the movie awesome? Loved the t-shirts too, but didn't get any of those things.Then we had lunch @ The Cheescake Factory! Celia and I had lunch there a couple months prior and I loved the little tamale corn cakes - delicious! Seems the time or two that I have eaten @ the San Antonio location of the restaurant, I never ordered something I really enjoyed - but those corn cakes were the best!After doing all that, we finally headed to the hotel to check in! We had our lunch left overs for dinner, so we were in for the night!You know what? I was just previewing the photos, and I'm going to include some more from Build a Bear! There is another view of Saba getting repaired! So glad those girls know what they are doing!I'll give you some time to enjoy these photos before I blog on Part 2 of our trip! I do have to warn you, that there are some disturbing photos I will be posting. I sent one to Celia and she was upset by it. I just want everyone to see how all your prayer help me get through the very difficult times that I go through with these procedures! Until then everyone - I love you all so much, you give me the strength I need to endure what I go through! I know I repeat myself when I say that without all of you, there is no way Mark and I could do this on our own! It is amazaing how many people came forward to help! People going out of their way to help us w/our luggage, or trading seats with us if we weren't all together on the way home!Ok - enough of everything ! Hanz is calling me to play with him, so gotta go! God Bless!